How to have a good death

This is an audio transcript of the FT Weekend podcast episode: ‘How to have a good death’

Lilah Raptopoulos
I recently talked to someone who has devoted her entire life to helping people die. Her name is Anne Coker.

Anne, can I ask: what does it mean to have a beautiful death?

Anne Coker
Well, first of all, physically, you, getting the balance of somebody being pain-free. And having relatives as possible. And for no distress to come to them during the process.

Lilah Raptopoulos
Anne retired recently after more than 45 years as a palliative care nurse. Her career has spanned ten nursing homes and hospices across the UK. She’s a pro. Anne’s daughter, Imogen Savage, recently wrote a very moving piece about her mother for the FT Weekend magazine. She’s been watching her mother throughout her life.

Imogen, what do you remember seeing and hearing about your mother’s work when you were growing up? I mean, I had the sense that you had this, like, real front-row seat to the world of ageing and death that, like, few of us ever have, much less young people.

Imogen Savage
Yeah, there was a kind of privileged position. I remember just as a child going into these homes, always feeling a bit uncomfortable because it’s not a kind of form of communication you learn. You feel that you need to communicate in a different way. And you don’t. You’re never taught how to do that.

Lilah Raptopoulos
And what is that form of communication, which . . .

Imogen Savage
I think it’s just, it’s much less verbal. You have to kind of present yourself as somebody who is without a guard, who’s not threatening. These are very vulnerable people, and each one has different needs and different issues.

Lilah Raptopoulos
Imogen has been thinking a lot about her mother’s career because nursing is kind of in crisis in Britain. Earlier this month, tens of thousands of nurses across the UK walked out to protest unfair pay. In December, there was the biggest nurse strike in NHS history. End of life care is just one part of this story, but it matters a lot because it’s a place where cutting corners can happen in the extreme. We just don’t like to talk about death. But today we are going to talk about what it takes to give someone a beautiful death and why it’s important that we try to.

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This is FT Weekend. I’m Lilah Raptopoulos.

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Lilah Raptopoulos
Imogen and Anne, thank you so much for joining me. Welcome to the show.

Imogen Savage
Thank you very much.

Anne Coker
Thank you.

Lilah Raptopoulos
We are thrilled to have you both here, because, Imogen, you recently wrote a very moving piece for FT Weekend about your mother’s career as a care nurse, which spanned 45 years. Is that right?

Anne Coker
Yes. If not longer, really. Longer than that really. Just over.

Lilah Raptopoulos
Wow. And it was a really very revealing insight into nursing and into caring for the elderly. And it asked big questions, at least for me, about like, how we deserve to spend the end of our lives.

Anne Coker
Yeah.

Lilah Raptopoulos
And I love to start, just by asking, Imogen, could you tell us a little bit about why you wanted to write this piece?

Imogen Savage
Yeah, I think I’d actually been thinking about writing it for a while. And I think, you know, throughout my life, my mum has always talked to me about her work and about the patients and about the other nurses and the carers. And I also spent time in the nursing home with her as well. So it’s has been a long time in the making and I think something about the nursing strikes set something off for me. And then I thought, I feel like I need to get this down.

Lilah Raptopoulos
Yeah. And how was it? What was it like to be interviewed about your career for three days by your daughter?

Anne Coker
It was quite emotional, really. Because I haven’t really sat down and thought the whole thing through. I mean, it was basically a huge part of my life. And yet, you know, I kind of separated family from work. And then I suddenly felt like a person going through all of this because I was seeing it a little bit from her eyes, too. I’d forgotten about the times that Imogen had come as well. And I remember being so proud of her. So proud of the way she worked and how sensitive she was. And when I read the piece, I realised how sensitive she had been to my feelings and to the feelings of the people I was looking after.

Lilah Raptopoulos
Anne began working as a nurse in the 1970s. Her brother was unwell growing up, so she was drawn to the act of caretaking. When she started training at 20 years old, her first job was to bathe everyone in a 15-person ward.

Anne Coker
I mean, there’s no doubt in my mind that it’s a sort of calling. I mean, you know, so going into the most unpopular field of nursing that you could possibly go into, and the most poorly paid. (chuckles) It wasn’t glamorous. It was really very basic. But I knew that I could make a difference within that field.

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Lilah Raptopoulos
The work was hard over the years. Anne treated people who were scared and vulnerable and often couldn’t communicate. And Imogen as a child watching her mother work saw a lot. She remembers one story of being young and waiting for her mother to finish a shift.

Imogen Savage
There was a bit of a kerfuffle at the end of the corridor and lot of people around and I went into the room and it was a kind of, it was a bizarre experience. There was something strange in the air. And I think the vibe was a little bit panicky, but also that everybody had to remain calm. And the room was sort of lit with this peach glow. And I remember it vividly. I remember wanting to stay in the room because I wanted to know what was going on. And then I was ushered out. So I knew that there was somebody dying in the . . . And then my mum came out and afterwards she . . . I asked her what was happening and she said it was somebody dying and that it had been a beautiful death. Which obviously made me think about the different ways of dying.

Lilah Raptopoulos
Yeah.

Imogen Savage
That there are different ways.

Lilah Raptopoulos
A major part of Anne’s job was to make people feel at ease and to make them feel like human beings. That could mean making porridge for an old lady who liked it a certain way, or noticing the family photos on someone’s bedside so that she got a sense of their lives. She would use whatever little details she could to understand them, and that was so that she could anticipate their needs as they started to get less communicative and closer to death.

Anne Coker
It’s a sort of intuitive thing where you can tell so much from a person just by the way they move and the way they and then ask them questions about things. Sometimes people are a closed book. Sometimes people just allow you to talk a bit about how much they want you to do for them, how much they need you to physically do things for them and so on. How independent they are and everything. I think it’s just years and years of experience and being able to be flexible and also to spend time at the beginning with a person so that you can get to know as much information.

Lilah Raptopoulos
Yeah, it’s a very nuanced thing. Yeah . . .

Anne Coker
It is, it is. And some people actually don’t do that. You know, I worked with carers who are just remarkable and with nurses and but some it was just a job and, you know, those things didn’t really matter.

Lilah Raptopoulos
Anne says that the most difficult caretaking is caring for people with dementia. You do the same thing over and over while your patient just becomes less co-operative and sometimes downright violent. In general, she understands that this work can burn nurses out, but she also strongly believes that when there’s enough support, a good death for almost any patient is possible. There’s one patient that she remembers vividly. It was an old lady who was on morphine and hallucinating. She seemed out of it and her son was really worried about it. So he went to find Anne to help him. Anne went into the room.

Anne Coker
She was really happy. (chuckles) She had no pain. And all of these people that she knew that she thought were coming to get her or, you know, that she was seeing these people. It was quite bizarre, really. And there were many instances that made me think, oh, my goodness, that’s that strange when somebody was about to die and they would see so vividly their wife or somebody there for them. And anyway, she was seeing all these beautiful people in her room and she was very, very happy. And I said, well, she’s not quite ready yet, but she’s got all these people to see and so on. And he kind of calmed down and he understood.

Lilah Raptopoulos
Yeah.

Anne Coker
Then she got tired and of course, then she did pass away very peacefully. And that was a very beautiful death because she’d had the party in the room. (laughter)

Lilah Raptopoulos
But this kind of work where you take time and lean into the experience of the person who’s dying, it’s getting harder. Because palliative care is becoming a profit-led business and one that private equity firms are investing billions of dollars into. So budgets are getting cut and studies show that the quality of these homes are getting worse. There are higher mortality rates, fewer caregivers . . .

Imogen Savage
The system of financing homes is not necessarily always based on the needs of the patients. That’s the kind of divide there. And if they’re owned by private companies, backed by private equity and the companies go bust, then the homes have to close.

Lilah Raptopoulos
Yeah. So what you’re saying, I mean, elder care has sort of become a business, right? That it’s being privatised across Europe. Many are now owned or funded by private equity funds because they see sort of a business opportunity here. (chuckles)

Anne Coker
Yeah.

Imogen Savage
Yeah.

Lilah Raptopoulos
And so Anne you’re saying that often if it doesn’t make sense financially, then homes will close and nothing will replace them.

Anne Coker
Yeah.

Lilah Raptopoulos
Can you speak a little bit more about that?

Anne Coker
Well, I know that people have to put money, they invest their money into something. So they invest because they want to get a return on it. And I think that what I noticed was that when a big company came, took over the place, it was then all about budgets. And I remember them asking me in one home if we could clean the carpets at night on the corridors in a dementia unit. I said, “No, we can’t do that.” There was enough chaos going on that was really to save money that the night stuff would do that. And then what really annoyed me was that, you know, this was going to finance people in champagne and swimming pools and we were like flogging our guts out to do that. Whereas really what we wanted was to give good care.

Imogen Savage
And that’s just the business model. I mean, they have to get returns and they do that by cutting staff. 

Anne Coker
If somebody went off sick, we were told to use the cleaner for that shift. Not to put anybody in.

Lilah Raptopoulos
Oh my god.

Anne Coker
And you know, it was all about saving money. Because the people in the office were under pressure because these are profitmaking companies. They had to make profit year in, year out. How do you do that in a nursing home? And it was always us that suffered. And of course it was the residents who suffered. It just this shouldn’t be how care is run.

Lilah Raptopoulos
Mmm, yeah.

Imogen Savage
It’s a ludicrous model of financing the care of the most vulnerable people in our society. My mum told me many examples of people dying alone simply because there weren’t enough staff on and it shouldn’t happen.

Lilah Raptopoulos
Mmm, yeah. Anne, you just retired after these nursing strikes began. I’m curious what it’s been like to watch them?

Anne Coker
Yeah, I can understand how frustrated nurses are and carers. Carers, I mean, really and truly. Their . . . how hard they work for such little money. And it was never about the money. I mean, nobody ever really talked about the money. They talked about the fact that there wasn’t enough of them to do the work and that they were under so much pressure and, I think, that was quite . .  . that’s quite often the frustration. And then to think that you’re being, you know, you’re so undervalued for what you do. I can understand that completely. Because this is such an important part of life: it’s death, you know? And it’s, you know, caring for people who are sick and dying is so undervalued. When I had nurses and food banks and I mean, I remember my own struggles financially for such an important job. It was just, I think, it’s just so unfair, really. And you can tell the society by how they value the caring jobs and teaching and so on.

Lilah Raptopoulos
Yeah, I guess big picture, Imogen, like, you know, from your mother’s story, like, what do you want us thinking about?

Imogen Savage
Well, I mean, if (chuckles) if I could dream big, it would be to rethink how we finance end-of-life care. How we value nursing and care work. And how we support nurses and carers to do their work. One of the things I wanted to convey was also that . . . what’s happening in nursing homes is something really remarkable and beautiful. That people don’t normally get to see. And, you know, there’s a whole world in there that sort of functions in a different way. But you have to learn the skills to communicate differently. And yeah, when you do, it’s really a . . . it’s a remarkable thing to experience. And I wish that we had more interaction with the elderly, especially those at the end of their lives. That would be a wonderful thing. But it’s not . . . that’s just not the way our society is set up.

Lilah Raptopoulos
Imogen and Anne, thank you both for your time and your work. And yeah, this is a real honour.

Imogen Savage
Thank you.

Imogen Savage
Yes, thank you. Thank you for giving us the time to speak about it as well.

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Lilah Raptopoulos
That’s the show this week. Thank you for listening to FT Weekend, the Life and Arts podcast of the Financial Times. Links to everything mentioned today are in the show notes, alongside a link to a great discount on an FT subscription. That’s also at ft.com/weekendpodcast. There’s also a link in there for discounted tickets to the second annual US FT Weekend Festival. It’s in Washington, DC on May 20th.

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